‘Why isn’t anyone congratulating me? Sadly, my daughter’s arrival wasn’t celebrated…’

Bella’s pulse rate would rapidly drop throughout my labour, so I had to stay on my right side and be side prone. Due to her narrow airway, this later made sense. Due to the epidural and Pitocin, I felt sick and tired. I had to push when the time was right, then turn back to my right side. Strangeness, bafflement, and lack of excitement characterised my feelings. It appeared that a lot was going on.

My mother, husband, the delivery nurse, the midwife, and the NICU were already in my room. We learned the baby was having trouble exiting after about 30 minutes of pushing. After being paged, my OB doctor joined the rest of the group in the room. Due to the shape of my pelvis, I needed two persons to deliver Bella.

Bella finally entered our world after a 12-hour labour. She was five and a half pounds when she arrived sunny side up. I observed a fairly little folded ear when she arrived. Since I had heard that newborn babies have peculiar appearances, I didn’t pay it any attention. She was so little, so red, and so helpless. I was eager to meet our newborn girl and was prepared. I was grinning and looking forward to holding my newborn when I realised something was wrong.

Why aren’t there any congratulations for me? Why is my spouse feeling so uncertain and afraid? My mum won’t even look at me, why? My doctor left, but why? Why are so many more people entering my room? It was quiet in my room. Nobody made any noise. I was torn apart by the quiet; I was left broken and heartbroken. I started sobbing, trembling, afraid, perplexed, and lost. I’m in tears as I type this. I think back on these moments with sadness because I recall that my daughter’s birth was not commemorated.

Other specialists entered and exited while taking notes. “What is happening? what went wrong with me? Why are so many people encroaching on our private moment? When I finally caught a sight of Bella, she appeared to be “different.”

A remarkable event turned out to be unsettling. The space was utterly disorganised. ‘What is happening?’ my father yelled as he rushed in from behind the curtain. Things will be okay, but we don’t know much, my mum said my dad after gathering herself as much as she could.

‘Mom, can I have kids again?’

These were the initial words that were said. I have no idea why. I have no idea why those particular words. Even the emotions I was experiencing at that time escape my memory. ‘Sweetheart, don’t think about anything right now,’ she whispered as she turned to face me. Everything will turn out for the best.

Bella needed to be rushed to the NICU to be hooked up to IVs, and my husband would follow, the doctors informed us. I had yet to hold my child.

‘Wait!’ I said. ‘I want to hold my baby.’ They put Bella on my chest and she looked so softly into my eyes. I will never forget that look, a look that said, ‘Mommy I am scared.’ It was also a look that brought comfort to me.

No matter what happens, she will always be protected, I said to her. I watched as my husband and infant left the room while my mother remained behind with me. I had never felt so empty. Why us?

I was able to reconnect with my husband and child around an hour later. You are required to press a button in the hospital where I gave birth after delivery to hear a lullaby. I was instructed to press the button as I was being brought to the NICU. I was unwilling to. I wasn’t having a party. I had no idea when or even if my infant would return home or be alright.

I cried silently when the lullaby was playing. I’ll never make another preparation. I thought life had let us down. Nothing was important anymore.
I became irate and enraged when messages from my girlfriends began to arrive. None of them received a response from me, and I even turned off my phone. I felt it was unjust. We had no idea what the future contained as they went home, cuddled their infants, and celebrated.

I was able to communicate with Bella and Erik at last. Erik and I were given our own space to connect with Bella on a skin-to-skin level.

‘Honey, I think I diagnosed our daughter,’ my husband said, ‘Well, there are two syndromes, however, one is worse than the other. Let’s hope it’s Treacher Collins.’ We read the article together, looked at pictures, researched, and cried.

We were fortunate to have an ENT from Stanford accessible that evening. She examined Bella and determined that the two potential disorders existed. We talked about our alternatives and were told that the choice needed to be made the following day.